As no two cases of ALS are the same, nor are any two ALS caregivers. There is no one-size-fits-all answer to each caregiver question, but that is not to say there isn’t much to be gleaned from the experiences of others.
For someone facing the daunting challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Regardless of how you prefer to learn, one thing everyone can benefit from is a reliable source of information, which can be found in the new ALS Association Caregiver Education Course.
Kristina met Lamar Woody in high school, although it wasn’t until college when they really found their true connection. Lamar loves to tell everyone Kristina was the prettiest girl in school. Little did she know then she would not only become his wife and mother of their beautiful daughter, Natalie, but she would also become his ALS caregiver.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great. Finding ways to help and show support for the caregiver in your life can make a huge difference for them, and for you.
October is National Physical Therapy Month, a time to shine a spotlight on the work physical therapists do and recognize the vital role they play in helping their patients manage challenges with mobility. And for people living with ALS, a physical therapist (PT) is a critical member of the multidisciplinary care team providing the specialized care they need.
As ALS progresses, the challenges of maintaining good nutrition as well as avoiding malnutrition change. With the support of caregivers and a multidisciplinary care team, these challenges can be managed to provide both the best nutrition and best quality of life at all stages.
Earlier this week, The ALS Association filed comments with the Centers for Medicare and Medicaid Services (CMS), urging the agency to provide Medicare coverage for seat elevation systems in power wheelchairs since these systems are a medical necessity for people living with ALS.
We strongly disagree with ICER’s final report on new ALS drugs, which may result in people living with ALS being unable to access life-extending treatments. ICER’s flawed conclusions were based on their discriminatory methodology, as the National Council on Disability has documented.
We recently talked with Garrett Sakomizu, one of the 2022 recipients of The Jane Calmes ALS Scholarship, to learn a little more about his connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare and ALS research.
In some way, shape or form, we are all list people. Some people are of the pen and paper list variety, others have taken to keeping notes on their phone or online calendar. And even those who would claim to not keep lists probably have an idea of some “to dos” they keep in their head. For ALS caregivers, far too often the last thing on their lists is themselves. So, here’s a list of ALS caregiver “to dos” for their own self-care and wellness.